d/Deafness

Overview


The term “deaf” typically refers to a person with total or partial loss of hearing. Therefore, the term deaf covers a broad spectrum of people with varied hearing capacities and is not always considered an illness nor a disability.

People are all too often mis-labeled and their experiences over-simplified by the limiting term “disability”. Deafness is one example of how perspectives offered through disability studies can be helpful in understanding complex systems of subjectivities, identity, and capability.

Like any relative state of health and fitness, deafness is conceptualized under a medicalized paradigm, but is also socially constructed. The term hearing impaired is often employed in biomedical and public settings, emphasizing impairments. Advocates of Deaf Culture in the United States often reject this term, preferring Deaf and hard-of-hearing instead.

A discussion of the capitalization of d/Deaf follows standard notation in American Deaf studies (Padden 1980). By capitalizing the word Deaf, scholars recognize people who consider themselves part of a culturally Deaf community and identify with “Deaf culture” and/or “Deaf politics”. When the word deaf is not capitalized, the word refers only to the state of non-hearing, or the medical referent used to describe an individual who has experienced hearing loss (Mand et al. 2009; Cooper 2007). “Capital D Deaf people self-ascribe to Deaf culture, think of themselves as being part of the Deaf-community, and typically communicate using a sign language” (Cooper 2007).

Drawing attention to the capitalization of the word d/Deaf helps highlight distinctions about d/Deafness that often go unproblematized. It is important to recognize that “deaf” does not imply “Deaf” – the latter is a conscious decision, an alliance, and a marker of identity. This distinction illuminates how limiting it can be to have only one word (deaf) at our disposal to describe such a diverse group of people and when studying issues concerning them.

Health Impact

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People are either born deaf or become deaf. Deafness can be conceptualized as a spectrum: at opposing ends of this spectrum are perfect hearing and profound deafness with multiple gradients of auditory capacity spanning the two poles. This spectrum includes individuals that are hard of hearing or experience hearing loss as a result of aging, as the result of an accident, or due to an illness or infection in varying life-stages, including in utero.

Deafness affects approximately 9% of any given population, including individuals who lose hearing due to advancing age (Corina and Singleton 2009). One infant in 1,000 will be born hearing impaired; based on these statistics, there were an estimated 6.2 million deaf people living in 2002 (Senghas & Monaghan 2002). In “developed countries” it is suggested that deafness occurs mainly as a result of inherited genetics (Estivill et al. 1998). Statistics surrounding deafness in “developing countries” are difficult to find; most peer-reviewed research is done in countries that offer more services to their deaf population.

In defining who is Deaf, it is important to keep in mind the conceptualization of a spectrum that includes individuals with perfect hearing. When speaking of Deaf culture and communities, we also are often referring to hearing people. Some hearing individuals that identify with the Deaf community in the United States are fully bilingual, using spoken English and American Sign Language or ASL. Many of these individuals learn sign language in their home environment because one or more family members are Deaf. Children of Deaf adults in the United States refer to themselves as CODAs and are thought of as living in Deaf and hearing worlds (Mand et al. 2009).

Medical/biological constructions of deafness typically categorize deafness pathologically. In medical/biological paradigms the emphasis is on hearing loss and speech defects; in other words, deafness is seen as a disorder in this purview (Rosen 2003). At best, this paradigm refers only to the ability, or lack thereof, to hear. “Disability for the non-disabled often means loss. For the most part, though, people who were born with physical impairments do not talk about their lives in terms of loss” (Nakamura 2006:xvii).

Even though some Deaf individuals may not see the need for medical interventions, there are potential health, educational and social impacts associated with being or becoming deaf. Most signed languages, like American Sign Language, are not consciously invented, imported, or contrived. “Natural sign languages are now generally understood by linguists as complex, grammatical systems with all the core ingredients common to other languages” (Senghas and Monaghan 2002). This is a fairly recent revelation that was disputed in academic circles until the late 1960’s. The idea that “…a visual-spatial mode of communication can express the full complexity of human experience and serve as a vehicle to impart knowledge” (Kisch 2008:284) is of fundamental importance and should not be under-valued nor taken for granted.

Despite the efforts of linguists, educators, speech and language professionals and social scientists to promote the legitimacy of signed languages, assumptions surrounding the superiority of oralist methods and interventions for deaf individuals, especially children, often persist. Oralist methods emphasize reading lips and using speech in the native language (i.e. English in the United States) and devalues the use of signs or signed languages. Oralism can be useful as many Deaf individuals and students rely on oralist methods to communicate with family members, hearing friends, and other people who do not sign. The total communication approach to Deaf education, which “focuse[s] on language development using both signed and spoken language” (McDonald Conner et al., 2000) is an alternative to purely oralist methods and can benefit deaf students by supporting their language development with the richness of both native languages.

Deaf people, as members of a linguistic minority, are often at a disadvantage when accommodations are not available. Closed captioning is an important consideration for Deaf people, especially in the event of emergencies when their inability to hear instructions could leave them especially vulnerable. Of course, the Deaf community is not a homogeneous group, and literacy rates differ. Professional interpreters are often necessary in medical, educational, and public settings. Speech and language professionals also offer services to families and the field of communication science disorders may be useful in ameliorating some of the potential health and social drawbacks deafness may present.

To Hear: Genetic Deafness
This film clip explains the genetic component of deafness, the role of biology, and the uniqueness of families with Deaf parents and hearing children (CODAs).





Medical Anthropology Research


Deafness as Disability? Let’s Hear Both Sides of the Story

Deafness is often understood by the hearing community to be a malfunction, a deficit, or a misfortune. The medicalized concept of deafness understands the partial ability or inability to hear as pathology to be treated with technology and medicine. Strictly biological/medical definitions are not useful in isolation; Deafness should also be considered in cultural context.

Cultural constructions of Deafness emphasize the shared language, community, and experience of Deaf people in the United States. This sense of community and experience has lead to the creation and recognition of American Deaf culture in the United States. Individuals who identify as culturally Deaf consider themselves to be part of a linguistic minority, but do not consider themselves disabled (Rosen 2003).

Children of Deaf Adults are a good example the fluidity and power of the cultural constructs of Deafness. Many hearing children of Deaf parents consider themselves culturally Deaf. “They represent a realm of ambiguity obscured by rigid categorization; their lives incorporate two often conflicting systems of meaning” (Preston 1995:1461).

Locations where large numbers of deaf people interact, like urban centers and villages with high concentrations of genetic deafness, often give rise to Deaf communities. Research has shown that when deafness is more common, due to genetic factors and endogamy, stigma is less common or non-existent. This was the case among the Al-Sayyid (Kisch 2007), and has also been illustrated in Ban Khor, Thailand where the rates of deafness are five to ten times the expected for a given population. “The great majority of people in Ban Khor have adopted either neutral or positive attitudes toward deaf people” (Woodward in Monaghan et al. 2003).

This is a good reminder that biology does not determine personal identity. Research suggests that where stigma is less prominent and signed languages are shared among hearing and Deaf people alike, deafness as disability is less likely to be the primary identifying factor of ascribed status. In these villages, dominant language ideologies are not working to deny part of the population’s natural communicative inclinations. Identity within these small communities is likely less political in nature, which may allow for more individual and communal productivity.

Applied Work


Only approximately 10% of deaf children are born to deaf parents (Nakamura 2006). The vast majority of deaf children are born to hearing parents who know very little about deafness and may not have any contact with people from a Deaf community. This phenomenon may partially account for why nuanced understandings of the rich context of the Deaf experience remain limited among hearing populations. Medical constructions of deafness tend to dominate in societies where “specialists” such as medical professionals, educators, and audiologists are relied upon to mediate decision making surrounding the needs of deaf children on behalf of the larger group (Ramsey and Noriega 2001). These professionals are able to offer a variety of interventions through technical and medical expertise; parents often turn to these professionals to “create equilibrium or order out of the ‘unnatural’ state that deafness brings upon a child” (Ramsey and Noriega 2001).

Cochlear implantation is a very real consequence of the medicalized approach to deafness. Physicians, audiologists, and private industry push this option on parents who are often unsettled or nervous upon learning of their child’s auditory condition (Incesulu et al. 2003). Hearing parents, who typically do not seek council from members of a Deaf community, often are presented only with biomedical options for their children. Subsequently, parents may come to think of implantation as the only logical and/or compassionate choice for their child and may see it as the only chance for communication. The choice to implant pre-lingual deaf children with cochlear implants has increased in the last 15 years, particularly in developed countries and among families with higher income and access to health care (Hyde and Power 2005).

Deafness is not a life-threatening condition, which is why parents have a choice whether or not to implant their children. The decision to elect or decline implantation affects family members and children receiving the intervention (Incesulu et al. 2003). Parents make the decision to have the surgical implant without any guarantees as to the benefit it will provide their children because there is so much variability among implanted children’s outcomes (Hyde et al. 2010).

That most parents describe the decision-making process and initial weeks following implantation as "stressful" to varying degrees (Hyde et al. 2010; Incesulu et al. 2003) is not surprising given the many consequences of language in human social life. Interdisciplinary research and applied work may help ameliorate family stress and promote opportunities for deaf individuals. Professionals in communication science disorders, a division of the allied health field, may provide insights useful to families making decisions for their deaf children. Speech therapists are often sought out by parents hoping to encourage their deaf children to become bilingual, using both oralized English (lip reading and oralized speech) and ASL.

Furthermore, cultural understandings of Deafness need to be taken into consideration with regard to public education. Eugene Garcia, former Secretary of Education under the Clinton administration, recognizes that Deaf students are "too often overlooked as a significant bilingual population" (Garcia 2005:75). His idea of "bringing [Deaf] populations into the broader discussion of bilingualism in the U.S. schooling process" (Garcia 2005:76) legitimizes the importance of cultural understandings of Deafness in the public arena. Applied work can and should be interdisciplinary in nature. The fields of anthropology, biomedical science, communication science disorders, sociology, disabilities studies, and education all have important contributions which should inform policy and research involving Deaf people.

Online Resources


Deaf Library:
http://www.deaflibrary.org/

Disability Rights International:
http://www.disabilityrightsintl.org/work/country-projects/mexico/

Galludet University & Virginia Commonwealth - 2002 Families and Deafness. Electronic document
http://biology.gallaudet.edu/

IDEAnet – The International Disabilities Educational Alliance Network:
http://www.ideanet.org/content.cfm?id=5B&newCommunity&CFID=1294229&CFTOKEN=42340019

Independent Living Institute:
www.independentliving.org

La Cultura Sorda:
http://www.cultura-sorda.eu/

National Association of the Deaf:
http://www.nad.org/

United Nations Enable:
http://www.un.org/disabilities/

Further Reading



Jullian, Cristian 2001 Génesis de la Comunidad Silente de México: La Escuela Nacional de Sordomudos (1867 a 1886).

LeMaster, B.
1999 Reappropriation of Gendered Irish Sign Language in One Family. Visual Anthropology Review 15(2):69.

Malpica, Leonor Segura
2007 La Educación De Los Sordos En México: Controversia Entre Los Métodos Educatios, 1867-1902. www.cultura-sorda.eu.

Monaghan, Leila Frances, C. Schmaling, K. Nakamura, and G. Turner eds.
2003 Many Ways to be Deaf : International Variation in Deaf Communities. Washington, D.C.: Gallaudet University Press.

Polich, Laura
2005 The Emergence of the Deaf Community in Nicaragua. Galludet University Press ed. Washington, D.C.

Works Cited



Cooper, Rachel
2007 Can it be a Good Thing to be Deaf? The Journal of Medicine and Philosophy 32(6):563.

Corina, D., and J. Singleton
2009 Developmental Social Cognitive Neuroscience: Insights from Deafness. Child Development 80(4):952-967.
Estivill, Xavier, Paolo Fortina, Saul Surrey, Raquel Rabionet, Salvatore Melchionda, Leonardo D'Agruma, Elaine
Mansfield, Eric, Rappaport, Nancy Govea, Montse Milà, Leopoldo Zelante, and Paolo Gasparini
1998 Connexin-26 Mutations in Sporadic and Inherited Sensorineural Deafness. The Lancet 351(9100):394-398.

Garcia, Eugene E.
2005 Teaching and learning in two languages [electronic resource] : bilingualism & schooling in the United States.
Teachers College Press. New York.

Hyde, M., R. Punch, and L. Komesaroff
2010 Coming to a Decision about Cochlear Implantation: Parents Making Choices for their Deaf Children. Journal of Deaf
Studies and Deaf Education 15(2):162-178.

Incesulu, A.
2003 Children with Cochlear Implants: Parental Perspective. Otology Neurotology 24(4):605.

Kisch, Shifra
2008 “Deaf Discourse”: The Social Construction of Deafness in a Bedouin Community. Medical Anthropology 27(3):283.

Mand, C., R. Duncan, L. Gillam, V. Collins, and M. Delatycki
2009 Genetic Selection for Deafness: The Views of Hearing Children of Deaf Adults. Journal of Medical Ethics
35(12):722-728.

McDonald Connor, C., Heiber, S., Arts, H., Zwolan, T.
2000 Speech, Vocabulary, and the Education of Children Using Cochlear Implants: Oral or Total Communication?
Journal of Speech, Language, and Hearing Research. 43(5): 1185.


Nakamura, Karen
2006 Deaf in Japan : Signing and the Politics of Identity. Ithaca, N.Y.: Cornell University Press.

Padden, Carol; Humphries, Tom
2005 Inside Deaf Culture. Cambridge, MA.: Harvard University Press.

Preston, Paul
1985 Mother Father Deaf: The Heritage of Difference. Social Science Medicine 40(11):1461.

Ramsey, Claire, and Jose Antonio Noriega
2001 "Ninos Milagrizados": Language Attitudes, Deaf Education, and Miracle Cures in Mexico. Sign Language
Studies 1(3):254-80.

Rosen, R. S.
2003 Jargons for Deafness as Institutional Constructions of the Deaf Body. Disability Society 18(7):921.

Senghas, R., and L. Monaghan
2002 Signs of their Times: Deaf Communities and the Culture of Language. Annual Review of Anthropology 31(1):69-97.

Woodward In Monaghan, Leila Frances, C. Schmaling, K. Nakamura, and G. Turner eds.
2003 Many Ways to be Deaf : International Variation in Deaf Communities. Washington, D.C.: Gallaudet
University Press.